Advanced parenting, p.23
Advanced Parenting, page 23
When your child has a major scare, be it a heart event, a seizure, anaphylaxis, a car accident, or a BRUE, it’s only natural and expected for parents to be scared and traumatized. But often families who face less directly life-threatening challenges can feel scared too.
Joe is a six-year-old with mild cerebral palsy. His main symptom has been toe walking and his motor coordination has led to more falls. He has seen physical medicine and rehabilitation specialists, who gave him braces for his legs, and he visited orthopedic doctors who offered surgery or injections to help his tight calf muscles. He has been in physical therapy multiple times a week for as long as he can remember.
His parents may not be facing an imminent, life-threatening crisis, but their worries can be substantial. They may be concerned that his diagnosis isn’t correct or that his symptoms will worsen over time. His parents may worry about inclusion and his ability to keep up with his peers, and about whether they’ve chosen the right providers to manage his condition. His parents might feel anxious about his pain and how it impacts his sleep. All of these worries can add up to a substantial load that is difficult to carry.
Most parents worry about making the right choices or about the uncertainty of the future. For some parents these worries can feel manageable. But for other parents the anxiety can be overwhelming. Sometimes parents try to bury the fear; shoving it aside and moving through it can feel practical, but often the anxiety will color the way you view your child and the decisions you make.
Excessive fear can lead you to distrust those around you. Parents can feel that speaking about a concern might make it come true, but this kind of magical thinking can disadvantage us from getting the support and perspective we need to manage our fear.
To approach excessive worry, I recommend prioritizing sleep, redirection, mantras, and breathing exercises—some of which I’ll discuss later in this chapter. Batching worries is another technique that can help. If you set aside half an hour a week to worry, when concerns intrude on your day, you can write down a reminder to think about that later during worry time. This process can prevent worries from derailing your day and remind you that you control your thoughts.
Beware Paper Tigers
When we face stressful situations, often our brains perceive them as threats and our bodies respond with a full-out fight or flight response. We see a tiger, and we begin breathing faster, our heart beats faster, we start to sweat. These are all survival interventions designed to help us run away from that tiger.
Caregiving parents certainly face plenty of real tigers—threats to your child’s well-being. But be mindful of “paper tigers.” A translation of a Mandarin Chinese phrase, zhi lao hu, paper tigers appear threatening but are not actually able to cause harm.4 Sometimes, we mistakenly respond to paper tigers as we might react to the real thing.
When a doctor does a physical exam of our child and finds something like a heart murmur or a developmental delay, often parents can react fearfully out of proportion with the severity of the situation. Their brain has classified this situation as a tiger, when really, it’s just an area of uncertainty requiring further investigation or treatment.
If you think your anxiety may exceed the severity of what you face, pause and ask yourself: What are you actually scared of? When parents stop to parse things out, they will discover they’re worried about something unlikely, like a brain tumor causing their child’s headache. Or they’re worried about something impractically far down the line, like their child missing out on college athletics due to a developmental delay. Sometimes, when parents just discuss the worry out loud, they can put the worry into perspective.
Anger
I once worked with a family whose teenage son had an advanced cancer. He had hidden his symptoms due to embarrassment—his scrotum was affected—and this thereby delayed his diagnosis. His mother was deeply upset with this, and felt angry with him—how could he have waited so long to speak up? I sat with her and we talked. I reminded her that it was okay to be mad at her child, even though he was really sick. She was angry because she loved him so much. And that’s actually where her anger stemmed from; she was angry that her loved one had cancer, more so than she was mad that he had hidden his symptoms. And she was desperately worried about him.
When parents are given some time to calm down and reflect, it can be easier to pinpoint the source of their anger. As a parent of a child with challenges, if you feel angry, or get angry, it’s likely for a good reason. Sometimes you may be frustrated with a loved one or member of your care team, but more often, that anger is diffuse and due to the unfairness of the situation. There’s a lot to be angry about, but I want to assure you now: you can be a kind, loving parent and a good person and still be ferociously angry.
Anger and resentment are part of the act of caregiving, as much as we might wish they were not. More than half of family caregivers of elderly individuals report feeling anger of at least moderate intensity frequently.5 Still, anger is as valid an emotion as any other, and most of the anger you experience as a parent and caregiver comes from an understandable place. It could be due to systemic injustice—your child may be in an unfair and difficult position and you are unable to fix it. Perhaps, as we discussed earlier, your grief about the way your life has had to change in light of your child’s diagnosis has led to resentment. It’s an expected and appropriate reaction. And sometimes anger, like fear, can be positive. It can spur us to address something or make a change. However, anger can also be harmful.
I find that many parents facing challenges are mad but don’t have an appropriate outlet. They can’t blame the child or the doctor, and they don’t want to blame themselves or their co-parent. So, they just try to choke it down. It’s not socially pleasant to be angry, and we don’t want to upset our children by coming off as hostile.
Parents have to learn to cope with feelings of anger so they do not drive up their blood pressure or infiltrate their relationships with resentment. Pediatricians know children with disabilities are at nearly three and a half times greater risk of maltreatment, and I suspect that anger—often provoked by structural inequities—is a leading cause.6
I find many parents who move past the stigma of admitting they are struggling with their anger still don’t seek help because they imagine no one can really help. However, there are effective ways to reduce chronic anger. In some situations, anger is a symptom of a larger problem, like burnout or depression, and treating the underlying concern with therapy or medication is the priority. Sometimes we can modify our environment in ways that reduce triggers for anger. If you find that you’re routinely angry during your child’s bedtime, it’s likely that your reserves of patience and energy are exhausted by the end of the day. You may find that changing something can improve matters, like getting more sleep or more support, changing the routine, moving bedtime earlier, or instituting new house rules. Studies have shown that regular exercise, at least two to three days a week, decreases anger significantly.7
Shame
Shame is a universal emotion; considered to be a cousin of guilt, we feel shame when we feel judged by others for violating social norms—while we feel guilty for actions, we feel shamed for being ourselves. In this way, shame cuts deeper into our identity, and studies have shown that individuals who feel more shame are those who are at higher risk for depression and anxiety disorders.8
In my practice, I once treated a toddler experiencing poor weight gain who required feedings by nasogastric tube. This is not an uncommon intervention; the child is fed through a catheter threaded through the nose into the stomach. Once the tube is in place, it’s typically well tolerated by children, but the process of insertion can be stressful—the child gags, and you need to confirm the appropriate position. Once in, a tube can stay in place for two to six weeks depending on the circumstances.
But for this toddler, every week the tube would be dislodged or have some kind of problem and need replacing. This meant more procedures and more discomfort for the child, and I couldn’t understand why. Finally, the mother opened up to me. She said attending weekly church services was really important to her. Church was an important source of community, and her faith was central to her coping with her daughter’s diagnosis. But Mom was struggling with the public seeing her daughter’s condition and could not bring herself to bring the baby to church with a feeding tube. She felt judged and inadequate that she could not help her baby gain weight without intervention.
On top of this, the mother felt guilty for tampering with the tube weekly and hesitated to bring it up at visits. She felt that not only would her community ostracize her for using a feeding tube, but I would also judge her for not using the feeding tube as prescribed. And no, I could not entirely understand her choices. I personally felt any church community that would judge her for using a feeding tube seemed like a community ill equipped to provide the sort of support she really needed. However, stigma against illness and ableism infiltrates most institutions and I knew that Mom feeling connected to her community was important to her and her daughter’s well-being. Every family has unique values and priorities, and only the family can decide what is in their child’s best interest.
Once she opened up to me about her concerns, it enabled us to adjust the care plan in a way that met all the family’s needs. Understanding that social inclusion, support from one’s community, and self-esteem as a parent are important to the family’s health and well-being, we adjusted the supplemental feeding schedule to occur mostly overnight and provided the mother with the training and supplies to remove and replace the tube more frequently around the church schedule.
Many years later, I had a family confront a similar situation. Three of their four teenage children would be undergoing confirmation at their church—a ceremony to demonstrate full commitment to their faith. For the parents, it did not seem right that their daughter would be excluded because she was unable to verbally communicate and required a wheelchair for mobility purposes. This family chose to make a different choice—requesting their child with significant disabilities be welcomed to the confirmation process within the church—something not standard previously. The church accommodated their request and subsequently more children with disabilities began to show up for services and joined the confirmation class. While this success is an inspiring example of the power of advocacy, it’s worth remembering that often, particularly in very stressful times, families just want to feel comfortable and don’t want to have the additional responsibility for changing the community or helping systems to evolve.
Parents struggle with shame, and we need to accept our own negative feelings about whatever challenge we face. To add to this emotional burden, parents are often required to digest other people’s negative feelings. I’ve heard from so many parents who found the “I’m so sorry” and the “That’s so terrible” reactions to their children’s diagnoses upsetting. While the family members, friends, and acquaintances are usually trying to communicate empathetically, when these statements are shared, the underlying message is one of despair. When a child has a disability, many parents view it as just one part of the child’s identity. But when other people feel that the child and family is defined by what they view as a tragedy, this view stigmatizes the family’s experience.
A family may feel that there are abundant triggers for feelings of shame, and this feeling is unfortunately commonplace. Triggers crop up like potholes in the path of a family trying to do the right thing. In my practice, I’ve worked with mothers who wanted to quit breastfeeding because of their feelings of inadequacy when weight checks weren’t going well, and I experienced this anxiety myself before starting to use supplemental formula with my daughter. Because parents facing challenges have many more interactions with medical and educational systems, there are more opportunities to feel shamed or judged. For example, individual educational plans (IEPs) are the gold standard for providing children with the physical, occupational, and speech therapy services they need, but I have had parents withdraw from services because it was just too hard to sit in a room with people talking about how a child wasn’t meeting the goals.
If feelings of shame are particularly difficult for you, perhaps rethink your care plan. Is it possible to let your co-parent, babysitter, or other caregiver attend those difficult meetings or appointments in your place and report back? This distance can give you more time and privacy as you process news and results. You can also discuss your feelings with your care team and try to restructure the process into something that will work better for you. Some parents purchase their own scales or other instruments to use at home so they can feel control over the process and call me as needed. Or if you find the IEP meetings to be stressful, you can consider meeting with the providers one-on-one if your school is willing. If speaking up is challenging for you, you can ask others to do so on your behalf and on terms you feel comfortable with.
When I started prekindergarten, I was bald from cancer treatments and had an infusion port for chemotherapy. I lived two hours away from the treatment center. Yet, at my mom’s request, nurses drove for hours, came to my school, and met with my class, teachers, and school nurse. They took on the work of educating my school community about my diagnosis and treatment and answered questions that might have been difficult for my family to face. Often you may find that others are willing to go out of their way like this to advocate on your behalf.
Though we live in a time of growing inclusivity, it is still not easy to be different, and we can be made to feel shame for these differences. Although it may sometimes feel unfair to be your own, or your child’s, advocate, if you can speak up about your feelings you may find people who are willing to change. Ableism colors our experience, and often even well-intentioned professionals like myself can make missteps and cause feelings of discomfort. The only way to improve is through awareness. Tell me and others where we misstep—we are listening and want to do better.
I once took my son to an art class and a boy in a wheelchair entered the room with confidence. He said loudly to the art teacher, without hesitation, “These tables will not work for me. In the past I’ve used a table at a different height. Can you get one for me?” I wanted to bottle up his self-esteem and self-advocacy to share with my patients and other parents.
Burnout
One day, I got a fax about a case from child services requesting the medical records of one of my families. This happened almost once a month, whenever concerns for negligence or abuse were filed on one of my patients. Often these heartbreaking stories caught me off guard but weren’t a surprise. I would hear about a child who had missed three appointments to have a cast removed after an orthopedic surgery, meaning a four-year-old had a cast for an extra six weeks, but I knew all the barriers they faced in getting care. In another situation, a shelter filed a complaint against a mother leaving her young children home alone to go to work. Child services has a bad reputation for splitting up families thoughtlessly—this is no longer the case. Generally, these child services cases would result in families with desperate need for support getting more resources—a free day care voucher or social work assistance with school, housing, or financial aid.
But this case surprised me. This family seemed to have it all together—stable jobs, family support, and a steady place to live. What could have happened? I called the children’s mother, and the story came tumbling out. Her child had misbehaved at a hospital event and Mom, after months of dealing with insufficient sleep and excessive stress, had snapped, slapping her child in front of a dozen doctors, nurses, and social workers. As mandated reporters, her action had been flagged as abuse.
This family had two sick children. One child who needed an organ transplant and another with a congenital malformation requiring serial surgeries. Their conditions required dozens of procedures and hospital stays between the two of them. I saw the children and spoke to the mother almost every week for one reason or another—if not to address her concerns or the children’s health, then to help with an insurance or school paperwork–related issue. The mother never seemed to miss a beat. She knew the meds, she kept the appointments, she knew her kids, she asked great questions. She seemed to be coping so well with all of the stress.
But as I listened to her now, she shared all of the other problems she had been dealing with on her own: the financial and emotional stress, the isolation, the relationship difficulties, and the behavioral struggles of two young kids with extra needs, including one whose medication seemed to turn her into a “monster.” She was having headaches from tension and unable to sleep even when her household was calm. She was burnt-out and her irritability and difficulty coping led to the slap.
I only had one question—why didn’t she say something sooner? Really it was more of a rhetorical question. Parents want to be able to do everything for their families and view caring for the children well as one of their most important jobs. Asking for help may make you feel like less of a parent. When you are in the trenches and burnt-out, you can feel hopeless—as if it is impossible that anyone could help. She wanted to avoid any judgment, including her own.
I could not fix her problems overnight, but I could connect her with a social worker to help get more financial assistance and help train some other family members to provide her with more respite. I could help reconfigure the medication and feeding schedule to try to protect her sleep more. I could talk to the specialist prescribing the medication with so many behavioral side effects to consider alternatives.
As her children’s pediatrician, and after fielding so many questions regarding the kids, I wanted her to know she could come to me as well to discuss her struggles. I was part of her caregiving team too. As a pediatrician, I was here to support the children, and that also meant that I was available to support the parents. Please know that if you are struggling, there is always value in asking for help.
